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Patient Advocacy

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Robert Ginyard

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Robert Ginyard:

Hi, I am Robert Ginyard. I'm a prostate cancer advocate, entrepreneur, podcast host, and a lover of life. I live in Baltimore, Maryland, and I'm here to talk about prostate cancer and my journey through life. My connection to prostate cancer stems from me being diagnosed with prostate cancer in 2010. I was 48 years old at the time, two daughters under the age of five, a beautiful wife, and now I had this diagnosis of prostate cancer. Didn't know where it came from. Later on I found out that my dad had prostate cancer, but ironically, my dad asked my mom not to share that news with us because he didn't want the family worrying. But I wish I had known that back then because it would've helped me keep track with my prostate cancer. And just to have a heads-up that somewhere along the line it could rear its ugly head.

Well, in 2010, my doctor noticed that my PSA levels were rising, and he had been monitoring that PSA for many years, and he said, "Hey, I'm not liking what I'm seeing here. I want you to schedule an appointment with a urologist." And at that point, scheduled the appointment. And sure enough, a week later, the results came back that it was prostate cancer. And like many people who get a prostate cancer diagnosis, it was shocking. Quite frankly, I didn't even think about curing the disease or how I would fare. I thought about death and what's interesting, I even thought about who was going to handle my burial, what route the cars would take to get to the cemetery. And so all I saw was death, but it was through friends and my doctor who really guided me through the process, I began to learn more about the disease, the chances of survival.

And the fact is I caught the prostate cancer early. And so that gave me options that a lot of people, a lot of men, particularly, of course, once they get a diagnosis and it's late stage, their options are minimal. So that's what helped me get through that point, is having a doctor who really knew my body and knew how to treat the prostate cancer. While my journey into advocacy was not something that I initially wanted to do, the story that I tell everybody about my advocacy work is that my wife suggested about a year after I was treated for prostate cancer, my wife suggested that I go to a cancer run walk festival. And it was a rainy morning. I just remember the drizzling, and I said, "I really don't want to go." But my wife was pushing me. She said, "Just go. You'll meet some other men there, and I think it'll be good for you."

Now, my plan was to go to a coffee shop and stay for about two or three hours and then go back home and tell her I had a great time. But my wife has super investigative skills, so I knew that I had to go to this event if not for the entire time, but at least like 10 minutes so my heart couldn't really lie to her. So I went to the event, and lo and behold, as I arrived, it was like this rainbow over the sky, and I could hear these harps and violins playing, and it was like, "Oh." And so I was there and the sky opened up, and it was a wonderful event. I got a chance to meet so many people, and that was my entree into advocacy. So my wife really should get all the credit for getting me into advocacy work.

And once I was there, again, I met so many people. It was such a great experience. And that was in 2011, and I've been in advocacy work ever since. Well, prostate cancer is something of course a lot of men don't like to talk about because you're dealing with a section below the waistline, and most men don't want to talk about that. Again, I didn't want to initially talk about it because it was a sensitive subject, but I got bold and went out and told folks about it. And from that point on, that's when the advocacy work began is I wanted to get out and make sure that men heard the full story about prostate cancer. And so once I did that, it felt good to me, but I was giving men the real story, and that seemed to help them. Many of the projects that I worked on were related to ZERO, the end of prostate cancer.

I became a board member for many years up until 2021. And through that time, a lot of the work that I did is we went out to communities for outreach purposes and talked to different churches and community organizations to make them aware of prostate cancer, the risk assessments that they should ask their doctor about. And so that was really most of my outreach is getting out in the community and making sure men made informed decisions about screening and then how to treat the disease. Well, it's important for black men particularly to be screened is because for the most part, prostate cancer runs in the bloodline for many of African-American men. And when it's not treated, it just doesn't give you any good chance of survival. And so with black men, a lot of this stems from back in the day with Tuskegee, Henrietta Lacks.

And so there's this suspicion or distrust of the medical community. And so a lot of times black men are really reluctant to engage in that kind of research, that kind of advocacy work because there's so much history behind it. But my message is for men to acknowledge that you are here to live a purposeful life and through living a purposeful life, you have to be healthy. And our wives, our family, our community, they need us around. So what better way to be around is to make sure that you're healthy. And that's been my big pushes to live a life of purpose. And by doing that, you have to live your best self and live your best life. And through early detection, and again, I say informed early detection, that's how we begin to make men more present in the community and extend their lives. Informed early detection, because a lot of times you hear about early screening saves lives, but a lot of times men are panicked when they go to the doctor and say, "I need to get screened," without even having the conversation about prostate cancer.

They may say, "It ran in my family," but they don't get the full details about prostate cancer. Some cancers are not needed to be taken care of right away. Prostate cancer generally is a slow growing cancer. However, I will say this, a lot of the African-American men that I've talked to, their cancer was a little aggressive. And in most cases, it is more aggressive than black men. And I can't say that as a blanket statement, but the men that I've talked to, their prostate cancer was more aggressive. So we have to really be up on the time what age you should be screened for prostate cancer. And so a lot of that informed decision-making is about how to make the best decision that aligns with your family history and aligns with your lifestyle. Well, what brought me into this phase of my life in terms of advocacy is really wanting to make sure that I help as many men as I can.

Now, I will tell you this, there are times where the fatigue of being that advocate can weigh on you. I found myself really getting lost so much in other stories from men and their battles that it was affecting my own life because I was taking in their problems, their issues, that I was really beginning to lose myself. And what's interesting is that I remember being introduced to different platforms to speak, and the title Prostate Cancer Advocate was being the definition of Robert Ginyard. And I said, "No." I said, "It's Robert Ginyard first, not prostate cancer advocate." And so I had to realign my life and my thought processes around who is Robert Ginyard? And Robert Ginyard is a person who cares about others, wants to see them live their best lives. And that's what I bring to men now is to make sure that, again, treating prostate cancer and overall general health, that helps you live a purposeful life.

So that's my story on prostate cancer and my journey into helping people live a purposeful life. Through that prostate cancer journey, there are a couple of things that came out of that. One was one night, a year after my prostate cancer treatment, I remember making a promise on the bed before I was getting ready to get my radiation treatment. I said, "Dear God, if I get through this, I'm going to go after so many dreams that I had put on hold for so long once I leave this facility." And sure enough, a year of procrastination, I was in bed one night and tossing and turning. My wife was starting to get frustrated. So if prostate cancer didn't kill me, my wife was going to kill me for tossing and turning and interrupting her sleep. And my wife said, "Look, I need you to either go to bed or leave the room."

And so I decided that I would calm myself down. I always keep a notepad next to the bed. And so I would make some notes on it and turn in, and I still couldn't get to sleep. So there was this voice that came into my head, it said, "DIBIDIBI." And I'm like, "What the heck does that mean?" And so as always, I lean over and write whatever came to mind. And I said, "Now, what does dibby dibby mean?" And right away after I asked the question, "It was dream it, believe it, do it, be it." And once that message came to mind, it reminded me that I made a promise a year ago to go after some dreams and goals. And as soon as I had come up with that message, I had a T-shirt emblazoned with DIBIDIBI on it, wore it to the gym, and just everywhere that I would go, and the message caught on it inspired many people, prostate cancer survivors and non-prostate cancer survivors.

They brought into the message and they were really inspired about following their dreams. One of the poems that I love so much is A Dream Deferred by Langston Hughes. And while his poem talks about the Harlem experience, a lot of that applies to life when he makes the analogies that what happens when you put a dream on hold, there are all of these things that can happen. And I take that as mental, physical, and spiritually, that when you don't follow dreams, it has its impact. So I made it a point that I would follow my dreams from that point on, and I never looked back. And so DIBIDIBI turned into a podcast that I host, Intentionally Overheard, where I asked my guests without asking them three questions. And there are three essential questions. Who am I really? Why am I here? And what am I supposed to do with my life?

And so we talk about their trials and trials of life, many health scares that some people have faced, entrepreneurs who started a business and didn't believe in themselves or nobody else did, and how they made it through those times to be successful and live a purposeful life. So that night of DIBIDIBI and not being able to sleep was one of the best nights of my life. And I look back at it, and I always keep a journal that that night I knew that I was living a purposeful life. My last words for the viewer, again, is to get back to the three important questions. I believe you are a spiritual being on a human journey. And there are three questions that you must answer. Who am I really? Why am I here? And what am I supposed to do with my life? And I think if you can answer those three, you are well on your way to living a purposeful life and having a lasting impact on many people around the world.

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